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Positive Behaviour Support

and Active SupportEssential elements for achieving real change in servicesfor people whose behaviour is described as challenging


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AcknowledgementsPositive Behaviour Support and Active Support Essential elements for achieving real change in servicesfor people whose behaviour is described as challenging, was written by John Ockenden (UnitedResponse) with assistance from Bev Ashman (United Response), Julie Beadle-Brown (Tizard Centre,University of Kent) and Andrea Wiggins (The Avenues Group).

We are grateful to Dr Rose Iovannone (University of Florida) for giving permission to use the Multi-TieredSystem of Support Model for schools in the USA.

We are also grateful to the staff and people who are being supported by United Response and TheAvenues Group for allowing us to share their stories and photos.


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03Positive Behaviour Support and Active Support

Challenging behaviour occurs as a result of a complex interaction between theindividual and their environment and has been defined as behaviour of such

an intensity, frequency or duration as to threaten the quality of life and/or thephysical safety of the individual or others and is likely to lead to responses that arerestrictive, aversive or result in exclusion (RCPsych, BPS, RCSLT, 2007)

The report into the systematic abuse of peoplewith learning disabilities at Winterbourne Viewoffers the opportunity to finally deliver sustainedimprovements which will ensure that people withlearning disabilities and in particular those withcomplex needs and challenging behaviour receivehigh quality, locally based and effective support.

The report and the associated concordat provide aframework of planned change across the networkof organisations involved in the lives of people withlearning disabilities (from government to workforce)in order to promote higher standards of support.A key feature of this change is the requirement toimplement Positive Behaviour Support.

Positive Behaviour Support is characterised byeducational, proactive and respectful interventionsthat involve teaching alternative skills to problem

behaviours and changing problematic environments.It blends best practices in behavioural technology,educational methods and ecological systems changewith person centred values in order to achieveoutcomes that are meaningful to the individual andto his or her family. (Bambara et al, 2004)

Positive Behaviour Support incorporates arecognition that reacting only to the occurrenceof challenging behaviour, the use of off the pegresponses and of punishment, are limiting andcounterproductive strategies. Rather, it focuses

attention on the development of a constructive,

functionally informed approach to providingenhancements in the environment and the capacityof the individual. Consequently it relies on (and isnot just improved by) the development of otherperson centred approaches including:

n Person Centred Thinking and Planning

n Effective Communication

n The National Autistic Societys SPELL frameworkfor supporting people on the autistic spectrum

n Active Support

All of these approaches have a role to play inthe implementation of better support for peoplewhose behaviour challenges but Active Support ismost closely aligned to Positive Behaviour Supportbecause of its emphasis on systematic changes to

the whole environment and in the way servicesfocus on promoting the quality of life of thepeople they support, a critical element of reducingchallenging behaviour. In addition, Active Supportis essential for the implementation of the otherapproaches listed above.

The purpose of this resource is to demonstrate theextent to which we believe Active Support underpinsthe effective implementation of Positive BehaviourSupport and the role it can play in supporting peoplewith challenging behaviour. We will also point to

relevant resources.

Positive Behaviour Support is characterised by educational, proactive and respectfulinterventions that involve teaching alternative skills to problem behaviours andchanging problematic environments. It blends best practices in behavioural technology,educational methods and ecological systems change with person centred values in order

to achieve outcomes that are meaningful to the individual and to his or her family


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There are 4 essential componentswhich promote engagement in activities and relationships:

Active Support:Active Support encompasses a range of approaches which aim to provide enough help to enable people toparticipate successfully in meaningful activities and relationships so that they gain more control over theirlives, develop more independence and become more included as a valued member of their communityirrespective of degree of intellectual disability or presence of challenging behaviour. To achieve this Active

Support focuses on the skills of staff in enabling engagement and on the capacity of the service to provideaccessible opportunities in a structured and predictable fashion.

Active Support has been shown to be important in determining the quality of life of people with learningdisabilities (Mansell and Beadle-Brown, 2012), and in particular in increasing peoples participation in daily life,social and community activities as well as increasing peoples skills, adaptive behaviour and choice (McGill &Toogood, 1994; Jones et al, 2001; Stancliffe et al, 2007; Beadle-Brown et al, 2012; Felce et al, 1986; Mansellet al, 2002; Mansell and Beadle-Brown, 2012). Research over many years also indicates that Active Supportshould be a vital component in the support of people with challenging behaviour (McGill & Toogood, 1994;Jones et al. 2013).

The primary outcome of Active Support is engagement in meaningful activities and relationships but the wayit looks in practice will vary depending on the individual requirements of the person being supported and thenature of activity or interaction theyre engaged in.

04 Positive Behaviour Support and Active Support

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Every moment has potential: Utilising the activities that need to be done (such as housework,shopping or gardening) and those that are available to do (such as visiting friends or relatives,playing sport or adult education) as opportunities for supporting people to be engaged throughoutthe day. These activities are often done by staff, with the people they serve acting only as non-participating spectators, if they are present at all. Active Support reverses this condition, so thatpeople are involved in all the activities of daily living, even (or particularly) when the presence ofchallenging behaviour might result in such opportunities being withdrawn.

Little and often:Thinking about activities and relationships as a series of steps so that staff canidentify those parts the person can do for themselves, those that staff can help them with andthose that staff will need to do for them in order for the person to experience success. As a resultstaff can start small, enabling people to dip in and out and providing shorter opportunities forengagement throughout the day rather than solely focusing on single lengthy events.

Graded assistance: Providing the right amount and type of support at the right time too muchand the person will be over-supported and hindered in their independence, control and status; toolittle and they will fail. Staff develop the skills they need to ensure the amount and type of help theyprovide is constantly adjusted to fit the particular activity, step or circumstance.

Maximising choice and control:Looking for opportunities for the person to express theirpreferences and be listened to, recognising that choosing within activities and relationships is avaluable opportunity for experiencing choice and control. Frequently responding to preferences thisway increases the likelihood that the person will learn that making choices makes sense, and willmake more of them.


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What is needed for successful implementation

Organising and improving support: Active Supportrequires the organisation and allocation of support so

that people experience high levels of predictability andconsistency, as well as coordination of the efforts ofindividual staff and the team as a whole to maximisethe planning of support and the extent to which stafflearn from each other.

Practice Leadership: Over the last two decades it hasbecome apparent that Practice Leadership by front linemanagers/team leaders plays a key role in enablingimplementation of Active Support. Research evidenceand direct experience both indicate that no amount oforganisational policy or staff development will have any

impact on levels of engagement in its absence.

Practice Leadership involves the demonstration of goodpractice, observation of staff support and feedback onperformance, a coaching process that can be executedby external experts or peers, but is most effective whenperformed by the immediate line manager of staffconcerned. This role necessitates a shift in managementbehaviour away from bureaucracy and towards beingan expert practitioner and coach.

The implication of this emerging understanding of howto implement good practice is that practice leaders

need to be identified, nurtured and encouraged (andnot, for example, punished reflexively for inadequatepaperwork) and that expertise in good support needsto run throughout any organisations line managementstructure. While this factor has surfaced in theimplementation of Active Support, related approachesare likely to depend upon the same conditions if theyare to gain traction in service delivery.

In addition to having the skills to provide ActiveSupport, staff also need to be motivated to do so. Toachieve this, senior managers must:

n Ensure the alignment of policies and procedures toActive Support

n Develop a motivational structure that recognisesand rewards staff for enabling people they support

n Communicate clear messages so that staffunderstand that this is what they value, over andabove anything else.



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1. Assessment and analysis

In order to effectively support people whose

behaviour is challenging, staff need to base theirsupport and interactions on a comprehensiveunderstanding of the relevance of the behaviourfor the individual. This needs to take accountof both the persons immediate situation andenvironment, including their physical andmental health, and the broader backgroundof their entire life. Furthermore, these contextsneed to be understood within the wider rangeof physical, social and occupational settingsexperienced by the person.

It is important to recognise the impact that staffbeliefs and attitudes have on their responsesto people who present challenging behaviour.The dominant interpretation of challengingbehaviour is that people displaying it understandwhat they are doing and how it affects others.This unhelpful misattribution of culpability,commonly arising in the context of emotionallystressful circumstances, leads to an increased riskof the use of punishment as staff reach to theirexperience of child-rearing or criminal justice, or

for the logic of natural consequences, for ways ofresponding.

Therefore, for ethical as well as rationalreasons, objective assessment and analysis arecornerstones of Positive Behaviour Support.A range of assessment tools (including directobservation) are used to gather qualitative andquantitative information about the person, theenvironment and their behaviour from a rangeof people who know the person well. Analysis ofthe information gathered is then used to produce

a summary (or more realistically, a hypothesis orbest guess) of the current understanding of thebehaviour.

As well as providing meaningful, objectiveinformation to underpin intervention strategies,this process slows things down and ensuresthat those involved explore whats happeningdispassionately, rather than leaping in with quickfixes and/or restrictive practices.

2. Planning

Following assessment and analysis, Positive

Behaviour Support requires the developmentof an intervention plan. Again this deliberateprocess promotes careful selection from a rangeof possible components and mitigates againsta rush for a quick fix. Indeed because longstanding challenging behaviour is likely to bemaintained by chronic quality of life deficiencies,Positive Behaviour Support plans must specificallyaddress unhelpful lifestyle and environmentalissues, regardless of the degree to which it seemsthat they are connected to the incidence of

challenging behaviour.Intervention plans should primarily focus onchanging the circumstances of the focal personso that occurrences of challenging behaviourbecome less frequent. Such changes identifiedby assessment and analysis will typically relate tothe physical and social environment the personexperiences, and the support they receive. Inaddition, the plan may include teaching of newskills, either designed to replace the challengingbehaviour or to promote coping and self-reliance.

Positive Behaviour Support plans particularlybenefit from work that addresses the attitudesheld by, and emotional experiences of, those whosupport the person in daily life. Overall, theseproactive strategies should form the bulk of theintervention plan.

However, reactive strategies need to be developedfor deployment when the behaviour occurs.Those issues that assessment and analysis havesuggested are directly related to the maintenanceof challenging behaviour (because, for example,

they reinforce it) need to be addressed, but themain emphasis of Positive Behaviour Supportreactive strategies is that they should bringabout a rapid return to calm normality. To thisend, strategies that might be counter-intuitive(for example they may continue to reinforce thebehaviour) should be considered if they enablerapid cessation of the behaviour, but only becausetheir potentially negative effect is diluted by theplans more powerful proactive strategies.

Intervention plans should be discussed with

significant stakeholders, including those expectedto implement them, and should be ethically soundand realistic in their scope and ambition.

Positive Behaviour Support:


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4. Monitoring and review

To establish the effectiveness of intervention,

Positive Behaviour Support requires objectiveand comprehensive monitoring and review. Suchevaluation must track a range of pertinent issuesin addition to the relevant aspects of the focalpersons target behaviour because of PositiveBehaviour Supports broader intervention aims,notably data concerning the quality of life targetsaddressed by the plan. In addition, attention paidto the fidelity of implementation promotes earlyidentification of poor or inconsistent execution,potential deterioration, or relapse. Ongoing

consultation with the focal person and theirsupporters enhances authentic and relevantappraisal of intervention effectiveness.

Positive Behaviour Support also recognises theimportance of providing feedback on the effectsof implementation to those responsible for it,to support both immediate maintenance andfuture developments of the plan. Because of theattention paid to contextual fit, notwithstandingany potential for wider changes in the personscircumstances, its likely success, while significant,

will only be partial. Positive Behaviour Supportplans are always expected to change to reflectchanges in the persons life, variation in thecapacity of their support network and to build ondeveloping success of implementation.

Established and thorough instruments that assistmonitoring and review of intervention outcomesare commonly in use.

3. Implementation

Positive Behaviour Support recognises that

intervention plans must take account of thecapacity of a persons support network toimplement change successfully. Plans that expecttoo much will typically fail and result not only incontinuing damage to the person and others, butalso in disillusionment with the whole approach.Consideration of the contextual fit (the extentto which the intervention plan is suited to thecircumstances in which it is to be implemented)is therefore vital. Similarly, the mode ofcommunication used to inform those with

responsibility for implementation needs to reflecttheir linguistic and technical understanding.

Careful consideration of such implementationissues is a prerequisite for the level of consistencythat Positive Behaviour Support requires of anysuccessful implementation. Attempts to reversethe consequences of poor or misguided supportare readily undone by occasional returns to suchlongstanding practices.

In order to effectively support peoplewhose behaviour is challenging,staff need to base their support andinteractions on a comprehensiveunderstanding of the relevance of thebehaviour for the individual.


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Explaining the fit:

1. Assessment and analysis

The purpose of Active Support is primarily to

promote engagement and improve the quality oflife of people supported also a primary aim ofPositive Behaviour Support. As such, its techniquesare designed to enable rapid identification of arange of personal preferences (e.g. for support andcommunication style, activity presentation, typesand intensity of activity) and individual strengthsand needs, regardless of the degree of disabilityexperienced by the person and of the presence ofchallenging behaviour. Establishing such individualpreferences is largely an experiential process,

focusing on commonplace everyday possibilities, andsupporting the person to be an active participantin their own lives. Instead of regarding challengingbehaviour as a reason to withdraw opportunities,supporters learn how to regulate their approach (forexample through graded levels of assistance) in orderto facilitate successful involvement.

These characteristics are particularly helpful whensupporting people whose behaviour challenges as

they involve the sort of changes in communication

and presentation commonly identified throughfunctional analysis. Similarly, high levels of ecologicalvalidity and potential generalisation arise from ActiveSupports focus on the natural and ordinary fabric ofdaily life.

Services providing Active Support will already bedelivering the levels of effective team work andpractice leadership required by Positive BehaviourSupport, and will be skilled in employing observationand feedback as a key means of establishing crucialfeatures of individual support.

Engagement is emphasised because of its positivecorrelation with quality of life, and because it isa necessary platform for all other valued lifestyleaspirations and accomplishments. Accordingly,Active Support delivers on Positive BehaviourSupports fundamental commitment to see past anychallenging behaviour to the quality of life beyond.


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2. Planning

Active Support recognises that most people live withothers and are served by a number of supporterswho work at different times of the day, and thatthese characteristics demand high levels of planning.Without this, services will usually fail to providethe help people need and any support offered islikely to be inconsistent and unpredictable. Criticalconsideration is given to the organisation andsequencing of activity, so that people substantiallyget what they need when they need it, and so thata pattern of events-through-time is established.In this respect, Active Support addresses, by default,two of the most commonly identified functions ofchallenging behaviour: avoidance of stimuli (events)that are aversive, frequently because they areunexpected and therefore difficult to understand;and the gaining of needed interaction or activity.

Active Support recognises that the developmentof predictability is vital in developing peoplesunderstanding of whats happening, both now,

and next, and in any attempt to increase levels ofengagement in real activity. Similarly, while plansmust be person centred and collaborative, theymust also provide for unforeseen circumstances andhealthy levels of flexibility. Services well practicedin Active Support provide the sort of structurethat works for everybody, while furnishing anunderpinning for the more precise arrangementsrequired by people whose behaviour is seriouslychallenging.

Written plans and profiles help staff to deliver stylesof support identified through assessment, and tofocus on enabling successful engagement. This,in turn, affords opportunities to provide positivereinforcement for adaptive behaviour, and for theperson to exercise increasing choice and control.Again, both of these developments mirror goalsof Positive Behaviour Support, and will frequentlyprovide sufficient change to yield decreasing levels ofchallenging behaviour.

3. Implementation

Delivering the support people need, how and whenthey need it, requires a range of organisationalprovisions. The roles of those who support the

person need to be clear, practice leadership(particularly modelling and coaching of goodpractice) needs to be provided, and managersneed to use a variety of management styles whenworking with staff to integrate the plan into theirdaily work practices. Active Support expects servicesto take account of individual and collective attitudesand ideologies in designing implementation. Theseconsiderations ally Active Support with PositiveBehaviour Support in its attention to the skills andabilities of mediators (normally staff) in delivering thesupport people need.

No plans can ever predict or allow for all eventualitiesso those responsible for implementation needto be adaptable and flexible, taking unforeseen

opportunities for engagement spontaneously andexploiting opportunities to reinforce behaviour thatis not challenging and to maintain interest andmomentum. Like Positive Behaviour Support, ActiveSupport is being implemented well when it is madeinvisible by the successful and natural lifestyles itenables.

Effective implementation of Active Support promotesincreased levels of engagement, skills developmentand choice making: all common features of effectivePositive Behaviour Support implementations.

4. Monitoring and reviewingActive Support provides a range of approaches whichpromote effective evaluation of implementationand changes in behaviour. These include thedevelopment of simple monitoring tools that focuson changes from the persons perspective (andwhich may be small in scale), that can be analysed insupervisions and team meetings, and compared with

evidence from direct observation to give a clear senseof change over time. This process of evaluation mapsrelationships between different factors operatingin a persons perspective. For example, establishing

links between the way a person is supported andincidents of challenging behaviour, so that plans canbe adapted over time.

Services providing Active Support are accustomedto the sort of objective evaluation required whensupporting people whose behaviour is challenging

conversely, staff who have not implemented ActiveSupport frequently struggle to gather and processevidence with sufficient rigour to be useful toPositive Behaviour Support interventions.


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Illustrating the Fit:

Fig 1 The relative requirement for Tiers 1, 2 and 3 interventions

Tier 1

Tier 2

Tier 3Few

Some

All

An analogy from schools in the USA that provideeducation for children with learning disabilities andchallenging behaviour serves to illustrate the broadrelationship between Active Support and PositiveBehaviour Support. Sugai et al (2000) describeinterventions in such settings as requiring three tiersof focused staff activity. Tier 1 represents the universalroutine teaching-based running of the school andclassroom with an emphasis on structure, support,effective communication, consistency and positiverelationships. Because it provides facilitating themediator for effective education and interaction, nochild or adult is excluded from the expectations andbenefits of Tier 1.

Where more support is required, Tier 2 addressesspecific challenging behaviours, providing moretargeted attention to small groups of students andinterventions for particular areas of concern alongsideTier 1 strategies. The goal of Tier 2 support is to avoidthe cost and intensity of Tier 3 intervention.

However, and as necessary, Tier 3 is incrementallyadded in response to the sort of persistent and intensechallenging behaviour that typically causes significantdisruption to the environment. It provides for complexand labour intensive analysis and the development of

a detailed, multi component intervention plan focusedboth on the decrease of problematic behaviours and anincrease in more acceptable alternatives.

The relationship between these three tiers is representedin Fig 1. The multi tiered system of behavioural supportis conceptualised as a continuum. When Tier 1 isimplemented for all, then Tier 2 is only required forsome children, while only a few need Tier 3.

Tellingly, Sugai and colleagues make the point thatwhen all three tiers are present and available, Tier 3support is indeed only required by a few, but in theabsence of the everyday facilitation provided by Tier 1(and to some extent Tier 2), many more children requirethe intense and costly support of Tier 3 interventions.

In adult services for people with learning disabilitieswhose behaviour challenges, the parallel is clear. ActiveSupport is the equivalent of Tier 1 and should be a

requirement for all. As an adjunct, Positive BehaviourSupport that is individual and focused, but not highlytechnical (at the Tier 2 level of intervention), can beprovided for some people by those who support themeveryday, while the few whose complexities requirehelp from separate specialist services should receive Tier3-like interventions.

This intensive and expensive support that should beneeded only by a few (those represented by the tip ofthe triangle) is however required by many more peoplein the absence of Active Support.


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Fig 2 Active Support and Positive Behaviour Support

Conclusion

Active Support shows itself to be an essential

adjunct to Positive Behaviour Support in the searchfor improved support for people whose behaviourchallenges for two reasons:

1.Challenging behaviour is generally a rational,normal response to adverse circumstances, notan aberrant, perverse anomaly. Active Supportrecognises the common need for predictability, forsensitive and flexible help to engage successfullyin everyday activity, to make choices and to exertcontrol over how we lead our lives day to day. Whenthese lifestyle (or quality of life) features are absent

or impaired, all human beings respond by behavingin ways that would be described as challenging.

Consequently, Active Support provides conditionsin which challenging behaviour generally decreases,particularly by improving peoples quality of life:helping people to develop new skills, gain self-confidence and experience choice and control. Formany individuals, Active Support delivers enoughof what they need to render challenging behaviourunnecessary.

Whilst a number of individuals will require theintensity and precision of Positive Behaviour Support,the majority would benefit significantly (and

sufficiently to minimise challenging behaviour) from

the implementation of Active Support.

2.Where Positive Behaviour Support is needed, itseffective implementation is dependent on a numberof service characteristics that are inherent to ActiveSupport, eg:

a. Objective assessment, analysis, monitoring andevaluation

b. Coherent and realistic planning

c. Implementation that is flexible and sensitive to

the critical role of mediators

d. A level of structure (of time, resources andaccountability) that facilitates considered,rational and proactive support

Positive Behaviour Support that is implementedin circumstances where Active Support is alreadyembedded in working practices and serviceethos can reasonably expect to exploit thosecharacteristics, and achieve therapeutic effect.Positive Behaviour Support that is implemented

without Active Support is likely to require high levelsof external support and scrutiny if it is to have anyimpact on the lives of those it is intended to reach.

Few

Some

All

Positive Behaviour Supportrequiring external support

and monitoringPositive Behaviour Supportprovided autonomously bySupport Teams


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Recommendations

1. Department of Health

It is important that the

government should provideleadership around goodpractice and recognisethat staff need to havemore basic skills in order toimplement Positive BehaviourSupport well. There needsto also be a recognitionthat if services for peoplewith learning disabilitiesprovided more person

centred support generally,the need for expensivespecialist challengingbehaviour services wouldreduce (although possibly notdisappear entirely). Therefore,we recommend that theDepartment of Health shouldrecognise Active Support asan essential strand of goodsupport and that it shouldbe included by default in

expectations of servicesfor people with learningdisabilities and autism moregenerally. As part of this,a clear definition shouldbe given as to the natureof Active Support and thetraining and support staffneed to receive. The researchis clear that just taking staffout for a days classroom-based training is not sufficientto implement Active Supportin practice there has tobe an element of in situ orinteractive training that helpsstaff to apply knowledgefrom training throughobservation, feedback andmodelling to shape up theirskills.


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2. For Service ProvidersOrganisational awareness of Active Support

The implementation of person-centred approachesrequires a whole organisation approach. All seniormanagers should familiarise themselves with theprinciples and elements of Active Support andwhat is needed for implementation, as well asunderstanding the extent to which it supportsthe implementation of Positive Behaviour Supportand other person centred approaches. There area number of resources listed at the end of thisdocument which provide more detailed information.

Training

When seeking or funding training on PositiveBehaviour Support for staff, service providersshould either ensure that the Positive BehaviourSupport training includes a substantial componentfocusing on Active Support OR should seek toprovide staff with additional training on ActiveSupport. Classroom based training should include,at the very least, information about engagementin meaningful activities and relationships and whyengagement is important in promoting quality oflife and reducing challenging behaviour, and about

the four essentials of Active Support. It shouldalso cover the importance of helpful routine andconsistency. However, it is very important that staffalso receive the hands on training to gain the skillsand confidence to try. Ideally, all staff should havetraining, as a cascade model relies on front-linemanagers having substantial expertise and skills topass the information on.

If staff are receiving training in Active Supportindependently of Positive Behaviour Supporttraining, the links with other person centred

approaches including Positive Behaviour Supportshould be made clear.

Practice leadership

Service providers need to ensure that the frontline managers whose role it is to lead the practiceof their team are skilled in Active Support as wellas Positive Behaviour Support, and have practiceleadership as a clearly defined part of the job.They should have the time, training and supportto observe, model and coach their staff. Trainingfor frontline managers should support them tomake the links between all aspects of their job rolethus promoting a holistic approach to their joband to the support they give staff. They should be

supported to develop the skills to provide feedbackand encourage reflection and problem solving withrespect to both good and poor practice to individualstaff and to teams in both supervision and teammeetings.

Aligning policy and procedures

Policy and procedures need to be aligned so thatthey are supportive of person-centred action suchas Active Support and Positive Behaviour Support.Organisations need to strike a balance betweenmonitoring systems and processes and attending to

a broad range of outcomes for people supportedand the quality of the support staff provide on a dayby day basis. Senior managers should ensure thatthey also know what good support for challengingbehaviour looks like. They should visit servicesasking the right questions and looking at relevantcomponents of support. In this way, they candevelop appropriate motivational structures thatwill maintain good practice. Auditing processes inparticular must include observational approaches.

Learning from other organisations

In addition to acquiring and reading the resourcesavailable, senior and middle managers should visitand learn from the experience of other organisationswho have already taken an organisation-wideapproach to implementing person centredapproaches.

The implementation of person-centred approaches requires a wholeorganisation approach.


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3. For families and friends

Families and friends of those who are supportedby services can play an important role inimproving the quality of support for their lovedone. If they are aware of the importance of ActiveSupport and Positive Behaviour Support this putsthem in a stronger position to ask care managersand services themselves for evidence that suchperson centred approaches are provided.

Organisations have a responsibility toencourage families and friends to increase theirunderstanding of good practice and should,for example, invite them to attend training onActive Support as well as Positive BehaviourSupport. Families and friends should expect to bewelcomed and encouraged in this endeavour.

For people on individual budgets where familiesand friends support the recruitment of staff, anawareness of Active Support will support the

process of recruiting staff with the right attitudesand preferably the right training and experience.

4. For commissioners and care managers

All commissioners should make themselves aware

of what good person centred support looks likefor people with learning disabilities.

When commissioning services for someone witha learning disability and challenging behaviour,commissioners should choose services that theyknow provide good Active Support in alliancewith Positive Behaviour Support. Commissionersmay use their previous experience to guide theirchoice but will often need to visit to observecurrent staff support in services familiar to them,and should always do so when considering

services they have not visited before.

The provision of both Active Support and PositiveBehaviour Support will be easier to achievein small dispersed settings that are designedaround the needs of the individuals they support.Such support should be included in servicespecification and/or contracts for people whomay show behaviours described as challenging.

Individual budgets should include funding fortraining staff not only in Positive Behaviour

Support but also in Active Support; as time goeson it is hoped that the workforce will becomemore skilled at person centred approaches ingeneral.

Local authorities should consider the provision oftraining and awareness raising sessions on ActiveSupport for all stakeholders including familiesand those who are personal assistants employedon personal budgets. This is especially importantwhen funding care packages for people withchallenging behaviour.

The provision of both Active Supportand Positive Behaviour Supportwill be easier to achieve in smalldispersed settings that are designedaround the needs of the individuals

they support.


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5. For inspection and quality assessmentagencies

Inspectors (or anyone else responsible formonitoring the quality of social care and healthservices) need to be familiar with what goodpractice for people with learning disabilitieslooks like and what it is possible to achievein terms of quality of life, despite challengingbehaviour, autism, or other complex needs.They should receive basic awareness training inActive Support and Positive Behaviour Supportand lead inspectors of learning disability servicesshould have more extensive knowledge of suchapproaches.

They need to have the skills to observe and toidentify whether people are engaged in a rangeof meaningful activities and relationships, andto identify whether the focus of behaviourstrategies used is on promoting quality of life orsimply on managing behaviour. They need to beable to check whether any paperwork completedis matched by what is seen in practice.

If inspection or quality monitoring agencies arelooking at the lived experience of people in the

services, observing and providing feedback toservices related to Active Support, then servicesare more likely to focus on providing goodsupport to people, rather than meeting perceivedrequirements to complete paperwork that oftendoes not reflect what really happens in the livesof the people supported.

6. Skills for care

Active Support should be a core competencyfor all staff in learning disability or autismservices. There also needs to be a recognitionthat it should be both a verbal and a practicecompetency. Other person centred approaches

such as SPELL, alternative or augmentativecommunication or Positive Behaviour Supportshould also be taught at a basic level withoptions for people to take it to a more advancedlevel if they are supporting people who needsuch approaches. This would have a substantialimpact on the occurrence of behaviour thatchallenges for many people and reduce the needfor specialist challenging behaviour services.

Active Support should be a corecompetency for all staff in learningdisability or autism services.

Thisphotodepictsmod

elswhodonothaveadisability.


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Some examples of the impact of Active Support

Geraldine

Geraldine is a middle aged lady who lives with three other

people in a suburb of a city in the south of England. Shehas a moderate learning disability and a visual impairment,and lived for some years in a number of small institutionsbefore moving to her current home. Geraldine is oftencharming, considerate and affectionate. She has a numberof skills and enjoys interacting with others. However, shefrequently experiences episodes of acute distress, shoutingand swearing, jumping up and down, banging her feetand hands hard on the floor, and scratching her face sorepetitively that it bleeds. Staff struggle to support Geraldinewhen she behaves in this way and find that their reactive

strategies have little effect beyond supporting her to calmdown a little, before the next episode.

It had been suggested that Geraldine was the victim of abusein one of her previous placements, so attempts were madeto establish an intervention that would help her recoverfrom the psychological damage involved. Sadly, despite anumber of attempts involving members of the local learningdisability team, no-one was able to make any progress in thisarea because of Geraldines cognitive impairments. Otherproactive strategies within the Positive Behaviour Supportplan included teaching her coping skills (so she can better

deal with conflict with her co-tenants) and improving lightingand the use of visual contrast in the dcor and fabric of herhome so that she can find her way around better. None ofthese interventions had an impact on the frequency, durationor intensity of Geraldines challenging behaviour.

However, a new manager with expertise in Active Supportwas appointed to lead practice in Geraldines service. Oneof his first acts was to change the way that staff support,and the events of the day, were planned and organised. Inparticular, he focused on increasing the predictability of whathappened when, and with whom. Some of this involved

scheduling existing activity in a more structured way, buteven more predictability was enabled by increasing theamount that Geraldine and her co-tenants were involvedin everyday activities around their home things that staffmight have done by themselves in order to be kind tothe people they supported. Rapidly, Geraldines challengingbehaviour diminished to a very low level (and when ithappened it was usually because staff had forgotten tomaintain the agreed structure).

Furthermore, many of the old strategies the service hadtried now proved effective they werent wrong, they just

werent part of something that enabled Geraldine to makesense of her world. Active Support brought the structure andcoherence that she required.


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Lucy

25 year old Lucy relishes her independence. As well

as holding down a part-time job, she volunteers,has a boyfriend and lives in her own flat. Lucy wasreceiving one hours support at both ends of theday, plus an hours support a week to go shopping.Although the aim of this support was to teach herthe life skills she needed to live independently, shewas actually struggling to keep her house in order.Rather than teaching her how to cook, the staffwere cooking microwave meals for her. She washoarding everything, from leftovers to rubbish. Thisbehaviour was beginning to put her tenancy at risk,

and she would respond with verbal aggression toany attempts staff made to help her.

We decided the best way of instigating a change inLucys lifestyle was to sit down and discuss thingswith her and her parents. One thing that wasntworking was the structured To do list she hadfor everyday things, on which different jobs wereallocated for every day. Lucy leads a very busy life sohaving a specific job for each day didnt work. Wedeveloped a new one which simply listed all of thethings that needed doing that week, and asked her

to tick off each one as she did it.

As well as enabling Lucy to take control of lookingafter her home in her own way, we also developeda routine with Lucy that complemented her lifestylemore naturally. For example, Lucy was sometimesmissing her morning bath, because she worriedabout missing her bus or being late on the days sheworked. So instead, we suggested she adapt theroutine so that she bathed in the evening on thosedays.

When it came to helping Lucy with mealtimes,we agreed to help her write a weekly menu andshop only for what she needed. This cut down the

amount of out of date food she had in the fridge

and reduced the amount of waste in the rubbishbins. We also suggested she write dates on anyplastic tubs of leftovers so she could control howlong to keep things for.

When it came to cooking, we realised all Lucyneeded was to be given the opportunity to takecontrol: she was so used to things being done forher, rather than with her, that she had never had theconfidence to give it a go.

After one month of changes, we met with Lucy and

her parents once more to review how things weregoing. The new routine we had developed with Lucywas working and her house was now much morecomfortable. She was getting on so well, in fact, thatwhen we arrived to help prepare dinner, she hadalready done it without us! We had noticed that onthe days her boyfriend stayed over, she did not reallyneed or want us around. She enjoyed looking afterhim and would naturally get the flat looking nicebefore he came. So we decided, with agreementfrom her parents, to reduce the hours of support weprovided.

On the surface, the support weve given Lucy mayseem very minor. But Active Support is almost alwaysabout the little things that make a big difference ingiving people control to do things for themselves.With Lucy, it was more important to talk her throughwhat to do and why, rather than show her throughactions. She needed routine, but it had to be onedesigned around her. And it had to be consistent towork.

Lucy is now confident and proud of what she can

do for herself. And she isnt scared to be assertiveand tell us what she wants. She has become theindependent woman she always wanted to be.

When it came to cooking, we realised all Lucy needed was to be given the opportunityto take control: she was so used to things being done for her, rather than with her,that she had never had the confidence to give it a go.


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Simon

Simon has a severe learning disability, epilepsy and

autism. For half of his 60 years, Simon has livedin institutions, often in locked wards and alwaysexperiencing limited opportunities for interactionand activity. Simons challenging behaviour (pushingand barging into people, grabbing peoples wristsand pulling them, running off, throwing himselfonto the floor both in and out of the house) meantthat his life was very impoverished.

Even when he moved into the community, Simonwas never really involved in his personal care, homeor neighbourhood life: for long periods, he would

sit alone in his bedroom. When they happened,activities in the community were always with 2:1support and were difficult as Simon would runaway, barge people and display other challengingbehaviours.

Simon doesnt use words to communicate: hischallenging behaviour tells us when he cant copeand needs to escape from whats happening.

The Positive Behaviour Support plan we developedindicated that his behaviours were probably

triggered by not knowing what was coming nextor what was expected of him. In response, Simonssupport team used the Active Support principle ofLittle and often to guide their work with him.

In particular, they concentrated on preparing and

presenting activities in such a way that they wouldmake sense to Simon and ensured that new activitiesprogressed at a pace that he could handle.

The best example is the way we supported Simonin the community. We started from scratch and tobegin with we just concentrated on going for ashort walk in a country park. We reasoned that thiswas likely to give Simon the best chance of doingsomething successfully, and we made sure that staffpresented this activity consistently (we always wentby the same route to the same park, for example)

and that we didnt change our expectations untilSimon was clearly confident about what washappening.

And gradually Simon has become more confident,so we have carefully expanded the range of options.He now visits several different country parks in thearea, but also walks into town to do his bankingand shopping. By using the principle of little andoften, we have supported Simon to do things hewould never have done successfully before, and allwithout any instances of challenging behaviour. Asa consequence, weve been able to reduce the levelof staffing to 1:1 for most community activities,which, given his previous life experiences, is a hugeachievement for everyone.

ResourcesAshman, B, Ockenden, J, Beadle-Brown, J and Mansell, J (2010) Person-centred active support: A handbook.Brighton: Pavilion Publishing.

Beadle-Brown, J, Richardson, L, Ashman, B, Ockenden, J and Mansell, J (2012) Promote Active Support(LD302, LD303).Brighton: Pavilion Publishing.

Mansell, J and Beadle-Brown, J (2012)Active support: enabling and empowering people with intellectualdisabilities.London: Jessica Kingsley Publishers.

Mansell, J, Beadle-Brown, J, Ashman, B and Ockenden, J (2005) Person-centred Active Support: A multi-mediatraining resource.Brighton: Pavilion Publishing.

Allen, D and Baker, P (editors) (2013) International Journal of Positive Behaviour Support Special Issue defining positive behaviour support. BILD, International Journal of Positive Behavioural Support, 3,2.


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ReferencesBambara, L, Dunlap, G, and Schwartz, I, (eds) (2004)Positive behavioural Support: Critical Articles on ImprovingPractice for Individuals with Severe Disabilities.Austin,Texas: Pro.ed

Beadle-Brown, J, Hutchinson, A and Whelton, B (2012)Person-centred active support increasing choice,promoting independence and reducing challengingbehaviour.Journal of Applied Research in IntellectualDisability25 (4), 291-307

Felce, D, de Kock, U and Repp, A (1986) An eco-behavioural comparison of small community-basedhouses and traditional large hospitals for severely andprofoundly handicapped adults.Applied Research in MentalRetardation7, 393-408

Jones, E, Felce, D, Lowe, K, Bowley, C et al (2001)Evaluation of the dissemination of active support trainingand training trainers.Journal of Applied Research inIntellectual Disabilities 14 (2), 70-99

Jones, E,; Lowe, K, Brown, S, Albert, L, Saunders, C, Haake,N, Leigh, H (2013) Active Support as a primary prevention

strategy for challenging behaviour. BILD, InternationalJournal of Positive Behavioural Support, 3 (1), 16-30

McGill, P and Toogood, S (1994) Organizing communityplacements, in Severe Learning Disabilities and ChallengingBehaviours: Designing High Quality Services, ed. Emerson,E, McGill, P and Mansell, J. London: Chapman & Hall

Mansell, J and Beadle-Brown, J (2012)Active support:enabling and empowering people with intellectualdisabilities.London: Jessica Kingsley Publishers.

Mansell, J, Elliott, T, Beadle-Brown, J, Ashman, B andMacdonald, S (2002) Engagement in meaningful activityand active support of people with intellectual disabilitiesin residential care. Research in Developmental Disabilities23 (5), 342-52

Royal College of Psychiatrists, British Psychological Society &Royal College of Speech & Language Therapy. Challengingbehaviour: a unified approach. Clinical and serviceguidelines for supporting people with learning disabilitieswho are at risk of receiving abusive or restrictive practices.College report CR144, 2007.

Stancliffe, R.J, Harman, A, Toogood, S, and McVulley,K.R (2007) Australian implementation and evaluation ofactive support.Journal of Applied Research in IntellectualDisability20 (3), 211-27

Sugai, G, Horner, R, Dunlap, G, Hieneman, M, Lewis, T,Nelson, C, Scott, T, Liaupsin, C, Sailor, W, Turnbull, A,

Turnbull, H, III, Wickham, D, Ruef, M, & Wilcox, B. (2000).Applying positive behavioral support and functionalassessment in schools.Journal of Positive BehavioralInterventions,2, 131-143


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