Can we prevent challenging behaviour in people with intellectual disabilities?

1. Can we prevent challenging behaviour in people with intellectual disabilities? Peter McGill

2. Acknowledgements With thanks to the colleagues with whom I have discussed these ideas especially Peter Baker, Roy Deveau, Simon Hewson, Paul Langthorne and Tony Osgood.

3. The causes of challenging behaviour • Genetics • Physiology • Development • Environment

4. Variation across genetic syndromes

5. Variation by physiology • Staff rate challenging behaviour as more likely when the person was ill (36%), around the time of seizures (46%), when sleep disturbed (52%) (McGill et al, 2003) • Carr & Owen-DeSchryer (2007) describe studies suggesting relations between SIB and PMT, otitis media, fatigue, allergies and constipation • In a study of 15 people Horner et al found illness etc to be an associated factor in 9 including PMT, constipation, lack of sleep, fatigue and (simple) illness (Horner et al, 1996)

6. Variation across the lifespan

7. Variation across environments • Challenging behaviour more likely when • there are high levels of social control and abuse • there are low levels of social contact • the environment is barren and provides low levels of stimulation • in regimes which rigidly control access to preferred objects or activities

8. Different contexts interact e.g. genes and environment

9. Cause and prevention • Since the causes of challenging behaviour are likely to involve the interaction of genetic, physiological, developmental and environmental factors... • ...Prevention will have to target such factors e.g. • Early intervention with genetically high risk • Active identification/treatment of physiological issues • Additional support with developmental transitions

10. But this is not what I want to talk about...

11. Prevention through the environment - background • Challenging behaviour is conceptualised as an individual problem requiring assessment/treatment • Prevalence is measured by the number of individuals displaying challenging behaviour • Epidemiological studies largely point to the “at risk” characteristics of individuals • Intervention focuses on changing the individual or changing the way in which their behaviour is managed

12. Challenging behaviour is an individual problem • most of the practitioner effort devoted to challenging behaviour is spent conducting individualised assessment and treatment • this focus is entirely consistent with most of the literature and professional guidance • the clinical literature on challenging behaviour is largely about individual assessment and treatment • I do not argue that this is not necessary, rather that it is insufficient.

13. Prevalence = the percentage displaying challenging behaviour • Prevalence is generally considered a fixed or invariant feature of challenging behaviour, reported in terms of the percentage of the population who “present” or “have” challenging behaviour. • this is an insufficient approach to prevalence that further entrenches the proposition that challenging behaviour is an individual problem.

14. Epidemiological studies identify “at risk” individuals • Epidemiological studies typically identify individual characteristics associated with challenging behaviour • Where environmental factors are considered (e.g. restrictiveness of setting) they usually turn out to be a proxy for severity of behaviour rather than a risk factor • Challenging behaviour is then something that you’re more likely to “get” if you are male, have autism or another syndrome, are severely disabled and have additional disabilities

15. Intervention focuses on changing the individual • The most common current approaches to intervening with challenging behaviour are medication, physical intervention and behavioural approaches (e.g. positive behaviour support) • Again I do not argue that these approaches are not valuable but I argue that this kind of intervention is insufficient and overly focused on the individual.

16. Why this approach is insufficient • We will not solve the “problem” of challenging behaviour by focusing just on individuals who display challenging behaviour • In the same way there are many problems which we have already recognised we cannot solve just by focusing on individuals who display those problems e.g. heart disease and many other medical conditions, crime, antisocial behaviour and other social problems

17. Why this approach is insufficient (contd) • Solving the “problem” of challenging behaviour needs to include effective work with individuals who display challenging behaviour but it also needs to include the prevention of challenging behaviour and, over time, a reduction in its prevalence. • There is no evidence, however, that our work with individuals has prevented challenging behaviour or reduced its prevalence. Indeed these outcomes have been very rarely (if ever in the case of prevalence) even considered as possible outcomes or worth investigating.

18. Why this approach is insufficient (contd) • Such outcomes have, however, been considered in other areas of work outside of ID e.g. the reduction of antisocial behaviour in communities (Biglan, 1995) and schools (Mayer, 1995), the routine monitoring of crime statistics (done by number of crimes not number of criminals). • If we are to achieve these outcomes, however, we will need to broaden the way in which we conceptualise challenging behaviour beyond that presented above.

19. An alternative “public health” approach • we start thinking of challenging behaviour as something that happens in problematic environments rather than just an individual problem requiring assessment/ treatment • we measure prevalence by incident frequency/severity (as well as number of individuals) • we develop an epidemiology which includes environmental risk factors • We “treat” the wider environment, as well as the individual, with a view to, ultimately, reducing the prevalence of challenging behaviour

20. Challenging behaviour is an environmental problem • Practitioners review and modify care provision where challenging behaviour is a problem. • As a starting point this will require gathering information about challenging behaviour which is not individually focused (as most current information is) and which allows the identification of those aspects of care provision which are related to the occurrence of challenging behaviour

21. Challenging behaviour as an environmental problem (contd) • Some examples of what this approach might look like • challenging behaviour is found more likely at points of transition. Schedules are revised to reduce unnecessary transitions, staff trained in supporting necessary transitions • challenging behaviour is found more likely in poorer families. Family support services train families, provide benefits advice to maximise income and provide toys to occupy and stimulate the child.

22. Prevalence is measured by the frequency/severity of challenging behaviour • If challenging behaviour not just a problem of individuals then does not make sense to measure prevalence only as number of individuals who “have” it • Frequency/severity of incidents • provide a more sensitive measure of variation in the occurrence of behaviour between environments and across time and populations • As “individual-free” measures they draw attention to environmental variables that influence challenging behaviour

23. The epidemiology of challenging behaviour includes environmental risk factors • This follows logically from measuring prevalence in a different way • One analogy might be with crime which, to an extent, can be “designed out” by focusing on the environments where it is common and the characteristics of those environments (e.g. poor lighting, lack of surveillance, opportunity) associated with its occurrence

24. Focusing on environmental risk factors (contd) • Some examples of what this approach might look like • challenging behaviour is found more prevalent when demands are made on individuals. Instead of just treating such findings as indicative of the function served by challenging behaviour for an individual we also treat them as indicative of environmental risk factors • Challenging behaviour is found more prevalent in conditions of social deprivation.

25. Intervention focuses on changing the environment • model of challenging behaviour less focused on individuals and more focused on care provision • So less use of individually-focused strategies and more use of care or care system-focused strategies

26. Intervention focuses on… environment (Contd) • For example • Psychologists identify care system failing to support good communication with resulting challenging behaviour - intervention increases capacity of care system (through staff training, coaching and other service development strategies) • identification of association between challenging behaviour and overcrowding results in changes to service commissioning to reduce the likelihood of overcrowding.

27. Conclusions 1 • we should seek to reduce the prevalence of challenging behaviour not just provide better assessment and treatment to individuals who currently present challenging behaviour

28. Conclusions 2 • By reducing challenging behaviour arising from environmental risk factors the task of those involved in individual assessment/treatment should be reduced (less people will display challenging behaviour) and made easier (those displaying challenging behaviour will display less frequent and less severe challenging behaviour)

29. Conclusions 3 • By reducing environmental risk factors we should reduce challenging behaviour in those individuals whose challenging behaviour is not currently regarded as frequent/severe enough to justify individual intervention, thus improving their quality of life

30. Conclusions 4 • By modifying care environments in ways that “design out” challenging behaviour we are likely to create environments that are more conducive to almost everybody. Amongst other things this is likely to prevent the emergence of challenging behaviour in individuals who would otherwise have displayed it.

31. References: Biglan, A. (1995) Translating what we know about the context of antisocial behavior in to a lower prevalence of such behavior. Journal of Applied Behavior Analysis 28, 479-492. Capone, G. T., Grados, M. A., Kaufmann, W. E., Bernad-Ripoll, S., & Jewell, A. (2005). Down syndrome and comorbid autism-spectrum disorder: characterization using the aberrant behavior checklist. American Journal of Medical Genetics Part A, 134, 373-380. Carr, E. G., & Owen-DeSchryver, J. S. (2007). Physical illness, pain and problem behavior in minimally verbal people with developmental disabilities. Journal of Autism and Develomental Disorders, 37, 413-424. Clarke, D. J., & Boer, H. (1998). Problem behaviors associated with deletion Prader-Willi, Smith-Magenis and Cri Du Chat Syndromes. American Journal on Mental Retardation, 103(3), 264-271. Emerson, E. (2001) Challenging Behaviour: Analysis and Intervention in People with Severe Intellectual Disabilities (2nd ed.). Cambridge University Press, Cambridge.

32. Horner, R. H., Vaughn, B. J., Day, H. M., & Ard Jr., W. R. (1996). The relationship between setting events and problem behavior. In L. K. Koegel, R. L. Koegel & G. Dunlap (Eds.), Positive behavioral support: Including people with difficult behavior in the community (pp. 381-402). Baltimore: Paul H. Brookes. May, M. E., Srour, A., Hedges, L. K., Lightfoot, D. A., Phillips III, J. A., Blakely, R. D., et al. (in press). A functional polymorphism in the monoamine oxidase A gene is associated with problem behavior in adults with intellectual/developmental disabilities. American Journal on Intellectual and Developmental Disabilities. Mayer, G. R. (1995) Preventing antisocial behavior in the schools. Journal of Applied Behavior Analysis 28, 467-478. McGill, P., Teer, K., Rye, L., & Hughes, D. (2003). Staff reports of setting events associated with challenging behavior. Behavior Modification, 27(2), 265-282. Royal College of Psychiatrists, British Psychological Society & Royal College of Speech and Language Therapists (2007) Challenging Behaviour: A Unified Approach. Royal College of Psychiatrists, London.

33. Contact Information: Peter McGill P.McGill@kent.ac.uk Tizard Centre University of Kent Canterbury Kent CT2 7LZ United Kingdom