1. Preventing Challenging Behaviour David Allen, Anton Dosen, Eric Emerson, Craig Kennedy, Paul Langthorne, Peter McGill & Bruce Tonge Challenging Behaviour-National Strategy Group 25.4.2009

2. Epidemiology Combined prevalence rates for challenging behaviour & mental health difficulties in people with intellectual disability 16- 41% ( Cooper et al, 2007 ) Challenging behaviour accounted for 32- 50% of reported difficulties Combined prevalence translates to 5-14 million of the world’s population 2-7 million with challenging behaviour?

3. Impacts People themselves: exclusion, institutionalisation, deprivation, physical harm, abuse, misdiagnosis, exposure to ineffective interventions. Carers: physical harm, physical & psychological ill health, increased burden of care and financial consequences, reduced quality of life. Commissioners/policy makers/providers: escalating costs, policy undermined, high staff sickness & turnover, service breakdown, scandal & exposés.

4. Challenging behaviour is: Relatively common High impact (social, clinical, fiscal) Long-duration Significant Direct & Indirect Lifetime Costs

5. Public Health Model Primary Prevention: impacting on the incidence of a condition by changing or altering exposure to the factors that cause it (immunisation for rubella, sun screen for cancer, plastic beer glasses for violence, adoption of healthy lifestyles for coronary disease) Secondary Prevention: screening for a condition before it becomes symptomatic and intervening early to reduce the likelihood of it developing (screening for cervical cancer, screening for high cholesterol & modifying diet/using statins) Tertiary Prevention: providing intervention to individuals who already have a condition in order to prevent further disability and restore pre-morbid functioning (insulin for diabetes, psychotropic medication for psychosis)

6. Risk Markers for Challenging Behaviour Personal: male gender severe-profound ID secondary disabilities (communication, mobility) certain behavioural phenotypes. Environmental: social deprivation sensory & material deprivation high levels of unpredictable stress repeated illnesses inconsistent practice high rate demands differential reinforcement of challenging behaviour high expressed emotion

7. Primary Prevention of Challenging Behaviour Reducing exposure to known risk factors: Reducing social deprivation Providing enhanced social & material environments Improving general health care High densities of positive reinforcement Widespread use of proven instructional technologies Routine use of antecedent management strategies Robust organisational infrastructures Coaching the development of more efficient alternate adaptive behaviours Communication skills training Coping skills training Targeting of at risk groups Males Severe-profound ID Secondary disabilities Behavioural phenotypes

8. Secondary Prevention of Challenging Behaviour Routine behavioural screening for those not already receiving intervention Early behavioural intervention (Wacker 1998; Kurtz et al, 2003; Reeve & Carr, 2000; McEachin et al, 1993; Dunlap et al, 1991) Critical periods? (Fenske et al, 1985) Providing enhanced practical and emotional support to carers

9. Tertiary Prevention of Challenging Behaviour Applied Behaviour Analysis Social Role Valorisation Person Centred Approaches Behaviour Change Strategies Behaviour Management Strategies Attention to mediator variables Attention to implementation and management process Achieve Behavioural Change Improve Quality of Life Reduce Risk ++ ++ POSITIVE BEHAVIOURAL SUPPORT AS A SERVICE SYSTEM

10. Issues Present focus is on tertiary intervention- illogical (and incomplete) Need to reconceptualise challenging behaviour within a public health model of prevention Strategic approach-political issue Embed key elements within existing strategies? Making use of existing frameworks (e.g. Care Standards) Consequences of not acting Cost-benefit Research