Facing The Challenge Dr. Ian Grey KARE Kilcullen Co Kildare Dr. Brian McClean, Behaviour Support Service, Brothers of Charity, Roscommon

National Policy Treatment Expert Multi-disciplinary Special unit

Challenging Behaviours 1.between 5 and 15 per cent of all people with intellectual disabilities are additionally challenged by behaviour 2.much higher rates in large residential settings, where 3,440 Irish citizens live 3.higher rates in congregal settings 4.higher rates when people are displaced from family and home

“The widespread adoption and consistent implementation of positive behavioural support could significantly improve the quality of life of many people with severe intellectual disabilities and severe challenging behaviour. To achieve this constitutes, perhaps, the single greatest challenge for this area of applied behaviour analysis” (Emerson, 2001, p. 192).

Evidence of effectiveness: Didden, R., Duker P.C, and Korzilius, H. (1997) Meta-analytic study on treatment effectiveness for problem behaviours with individuals who have mental retardation. American Journal on Mental Retardation. 10, “prior functional analysis of challenging behaviour correlates with a successful intervention. The behavioural interventions are much more effective than that demonstrated by medication, for example”

Content analysis of functional hypotheses Negative Reinforcement Hypotheses (77%) Positive Reinforcement Hypotheses (23%)

Five Exceptional People –Severity criterion –Placement Breakdown Medication Psychiatric symptoms Quality of life Costs Support systems McClean, B., Grey, I. And McCracken, M. (2005) An Evaluation of Positive Behavioural Support for People with Very Severe Challenging Behaviours in Community-Based Settings. Paper submitted to the British Journal of Learning Disabilities

Months Frequency of head banging (bouts) Frequency of physical aggression Aine Sean Andrew Ciara Tom % of 30 minute intervals with physical aggression Frequency of physical aggression

Aine Sean Andrew Ciara Tom % of 30 minute intervals with physical aggression Frequency of physical aggression Frequency of head banging (bouts) Frequency of physical aggression Months Units of Medication

Aine Sean Andrew Ciara Tom BaselineIntervention (26 weeks) Follow-up (74 weeks) Mini PAS-ADD Scores

Quality of Life Questionaire Schalock et al, 1989

Costs (in euro per annum) PrePost Ann13,46017,680 Andrew80,00083,600 Sean165,000 Ciara304,00090,000 Tom36,10075,000

The Role of Family

In summary 1.Flexible: Options in crisis 2.Responsive: Local 3.Individualised: Assessment and costing 4.Skilled: Training 5.Real lifestyles: Family

Evidence Based Practice “the conscientious, explicit and judicious use of current best evidence in making decisions about the care of individual people”

Evidence of effectiveness: McClean, B., Dench, C., Grey, I., Shanahan, S., Fitzsimons, E., Hendler J., and Corrigan, M. (2005) Person Focused Training: A model for delivering positive behavioural supports to people with challenging behaviours Journal of Intellectual Disability Research, 49,

Extremely Often (hourly) Very Often (daily or more often) Often (more than 4 times in month) Occasionally (1 to 4 times in month) Not at all present Never Frequency Evidence of effectiveness: Grey, I. and McClean B. (in press) Effectiveness of Person Focused Training: A Control Group Study. Journal of Applied Research in Intellectual Disabilities

Inpatient Studies Very few studies –Raitasuo (1999) Finland –Xendititis (1999) UK –Poole (2001) UK

Inpatient Studies 1 Raitasuo (1999) 5 bed unit with 24 hour care (1.4 ratio) 40 admissions in 18 month period Average stay 2.91 months 75% treated with anxiolytic 73% neuroleptic (35% diagnosis of psychosis) No change for small moderate ID group High re-admission rate (55%) within 6 months

Inpatient Studies 2 Xenitidis (1999) 13 bed unit (mild-moderate with severe CB) 64 people over 10 year period Reduction from.75 aggressive incidents per week to.33 per week per person “treatment based on sequential hypothesis testing and functional analysis” No details on medication No details on outcome after discharge

Inpatient Studies 3 Rowland & Treece (2000) 7 clients with challenging behaviour & autism presentation over 6 years No discharge over interval Emphasis on augmentative communication Reductions in use of anti-psychotics for 3 of 4 clients

Commonalities Data largely limited to mild ID Little good quality data with respect to challenging behaviour Little evidence with regard to medication usage and sedative effects Little evidence on challenging behaviour and mental health post discharge but high re-admission (50%) in some studies Evidence of ‘silting-up’

An additional E151 million per annum Could better outcomes be achieved by investing locally?