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 The widespread adoption and consistent implementation of consistent implementation of

positive behavioural support could positive behavioural support could significantly improve the quality of significantly improve the quality of

life of many people with severe life of many people with severe intellectual disabilities and severe intellectual disabilities and severe challenging behaviour. To achieve challenging behaviour. To achieve

this constitutes, perhaps, the this constitutes, perhaps, the single greatest challenge for this single greatest challenge for this

area of applied behaviour analysis” area of applied behaviour analysis” (Emerson, 2001, p. 192).(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, 387-399

“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”

0

2

4

6

8

10

12

Mean number of plans

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

0

50

0

20

40

0

200

400

012

1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18

0

50

Months

Frequency of head banging (bouts)

Frequency of physical aggression

Frequency of physical aggression

Aine

Sean

Andrew

Ciara

Tom

% of 30 minute intervals with physical aggression

Frequency of physical aggression

0

50

0

5

10

0

20

40

00.250.50.75

0

200

400

0

2

4

0

1

2

0

0.5

1

0

50

0

5

10

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

Frequency of physical aggression

Months

Units of Medication

Units of Medication

Units of Medication

Units of Medication

01020

Dep Anx Hyp Dep Anx Hyp Dep Anx Hyp

01020

Dep Anx Hyp Dep Anx Hyp Dep Anx Hyp

01020

Dep Anx Hyp Dep Anx Hyp Dep Anx Hyp

01020

Dep Anx Hyp Dep Anx Hyp Dep Anx Hyp

01020

Dep Anx Hyp Dep Anx Hyp Dep Anx Hyp

Aine

Sean

Andrew

Ciara

Tom

Baseline Intervention(26 weeks)

Follow-up(74 weeks)

Min

i PA

S-A

DD

S

core

s

Quality of Life QuestionaireSchalock et al, 1989

0

20

40

60

80

100

Aine Andrew Sean Ciara Tom

QO

L-Q

Per

cen

tile

Sco

res

Pre

Post

Costs (in euro per annum)

Pre Post

Ann 13,460 17,680

Andrew 80,000 83,600

Sean 165,000 165,000

Ciara 304,000 90,000

Tom 36,100 75,000

The Role of Family

0

5 0

0

2 0

4 0

0

2 0 0

4 0 0

012

1 2 3 4 5 6 7 8 9 1 0 1 1 1 2 1 3 1 4 1 5 1 6 1 7 1 8

0

5 0

M o n t h s

F r e q u e n c y o f h e a d b a n g i n g ( b o u t s )

F r e q u e n c y o f p h y s i c a l a g g r e s s i o n

F r e q u e n c y o f p h y s i c a l a g g r e s s i o n

A i n e

S e a n

A n d r e w

C i a r a

T o m

% o f 3 0 m i n u t e i n t e r v a l s w i t h p h y s i c a l a g g r e s s i o n

F r e q u e n c y o f p h y s i c a l a g g r e s s i o n

In summary

1. Flexible: Options in crisis2. Responsive: Local3. Individualised: Assessment and

costing 4. Skilled: Training5. 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:

0

20

40

60

80

100

Baseline 1st Quarter Follow-up

% o

f b

as

eli

ne

be

ha

vio

ur

n=138

n=65

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, 340 - 352

1

2

3

4

5

6

Training Control

Frequency Pre

FrequencyPost

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?