Right support, right time, right place….

Viv Cooper The Challenging Behaviour Foundation

To cover..Understanding needWorking in partnership with familiesBuilding support around the personProactive vs reactive strategies

Beginning with:Who are we talking about?What do we want to achieve?

Individuals“People whose behaviour challenges have the same needs as everyone else, in addition to special needs for help to overcome the problems their behaviour presents. They do not surrender their needs for personal relationships, for growth and development or for anything else because their behaviour presents a challenge to services. They have the same human rights as everyone else.” Mansell 2, 2007

What do we want to achieve?Good outcomes for the individualThrough a person centred approach to

planning and delivering support & services, which are

LocalHigh qualityFlexible

Policy into practice

Understanding the need: Early days…DiagnosisInformationBehavioursSchool & respite

Locating support – what was needed?

Access to local expertiseInformation and trainingA holistic approachPartnership workingLong term planning

Locating support – what happened?52 week school

275 miles from home

High cost

Planning - what next?

Working in partnership with familiesFamilies

“...are usually the main source of love, care and support for children and adults with learning disabilities…… Even when people leave home they do not leave the family. Families continue to offer a lifetime of involvement, support and advocacy…”

Valuing People Now (2009):P45

Why work with families?Commitment, love and supportLong termKnowledge and expertise and historyHolisticShared aims & goals“I will always be a part of my son’s life – I know I

am important to him even though he can’t tell me that in words. I know that come what may, I can rely on my family to always be there for me – and it’s even more important for him to have that too.”

Parent

Remember…“People whose behaviour challenges have the

same needs as everyone else, in addition to special needs for help to overcome the problems their behaviour presents. They do not surrender their needs for personal relationships, for growth and development or for anything else because their behaviour presents a challenge to services. They have the same human rights as everyone else.” Mansell 2, 2007

What do families want?Information

Good support

To be valued as partners

Their experiences…a lack of local expertise & capability in

understanding &responding to challenging behaviour

difficulty accessing services unless in crisisa lack of support and traininga lack of information to plan realistically, and

hopefully, for the future;not being included as essential partners Scoping report: McGill Cooper & Honeyman (2010)

Parents tell us…. “It feels as though I have been thrown off a

cliff into deep water and I don’t know how to swim. And all around me there are people who can help me, or teach me to swim. But I can’t get to them and they don’t help me, and I know that eventually I will go under”

“Living with a child with challenging behaviour is a profoundly hard and isolating experience.”

What would it be like if we got it right?Individuals and their families would have

the right support, at the right time and in the right place.

We know what works We know what to doWe know how to do it

Building support around the person

Understand their needsDesign a “capable environment” which includes:- Skilled staff support- Adapted physical environment- Learning new skills- Reviewing outcomes“.. A successful service looks like an ordinary home

or occupation, when…it is a carefully designed & organised service dependent on a great deal of skill & management.”

Mansell (2007)

What needs to happen?Early interventionPlanning – across children and adults services

Development of individualised local support & expertise

Monitoring of outcomes

What do we need to know?Starting early… we must work together to

Deliver evidence based practiceIdentify children at risk of developing

behaviour that is challengingTranslate identified need to development

of holistic support to meet itPlan long term to meet the needs of those

individuals & deliver good outcomes

We know what doesn’t work“I know how I would feel if suddenly I was taken

away from all that was familiar to me and had to live with people I didn’t know who were in crisis and behaving in ways that were challenging…”

“It was so traumatic when he was taken away to Winterbourne View, and then it just got worse, absolutely horrendous, and I can’t yet see the light at the end of the tunnel.”

Pathway options….Option PPerson centred needs

assessmentInput from range of

sourcesAgreed outcomesLocal support &

service designed around person

Monitor & review

Option RAssessment of suitability for

local existing provisionAttempt to fit into existing

provisionExclusion from local

provision / service breakdown

Search for out of area place Monitor & review

Which pathway is more likely?

Daniel’s route: Reactive pathway Local school & respite “not able to meet his

needs”Family getting to breaking pointOut of area 52 week residential school275 miles from homeLiving with 13 other children High cost – not contributing to local skill

developmentLack of local planning for return

(child/adult/education/social care/health/housing/workforce etc…..)

Changing direction: Alternatives to Institutional care

We know what doesn’t workWe know what does workWe know what we are aiming for

BUTWe need to change the “pathway”

Daniel’s route: Proactive Pathway Daniel is happy &

leads an interesting life

Local, close to familyAdapted bungalow-

HA tenancyGood staff supportExploring employment

opportunitiesCircle of support

What works?

A person centred approachWorking in partnershipStaff with knowledge and skillGood management & planningA focus on outcomes for the individual

“.. A successful service looks like an ordinary home or occupation, when…it is a carefully designed & organised service dependent on a great deal of skill & management.”

Mansell (2007)

Delivering the alternativesWe need:

LeadershipChange managementCommitmentPartnershipPlanning – short & long term

What needs to change?Working together to….

Focus on and invest in prevention & local support & service development

Commissioning (it is not purchasing!)

Registration & MonitoringEffective safeguardingData collection that is usefulClearer lines of

ACCOUNTABILITY

Collective responsibility

What will YOU do about it?

Actions Post WinterbourneStop putting people in the wrong

types of serviceInvest in the development of quality

local supportSort out the fundingOnly register appropriate servicesStrengthen safeguarding

Actions - localEvaluate services for people with

challenging behaviour against accepted standards (Mansell; Unified Approach)

Clear requirements in contractsEnsure there is monitoring of

outcomes, and action taken when outcomes are poor

Support (and use) the charter

Quality monitoring…..“I want support providers to ask

themselves: ‘would you like to live your life like this? Would this be good enough for you? For your son, daughter or relative?’ If the answer is no, then you need to change what you are you are doing.”

Parent

“Don’t keep asking me what my views are, or consulting me about this, that or the other or the latest new idea. All I want for my son is that he has a good quality of life, with good quality support and good quality services.”

Parent

“Quality means doing it right when no-one is looking.” Henry Ford

ContactThe Challenging Behaviour Foundation,

C/o The Old CourthouseNew Road Avenue

ChathamKent

info@thecbf.org.uk www.challengingbehaviour.org.uk

01634 838739info@thecbf.org.uk